Adenomyosis Experiences

[Roo7765]

I’ve just been diagnosed with this …initially very relieved as I was on an urgent referral and worried about cancer. However after reading about it I discovered it can put you at a higher risk of womb cancers also.

the only symptoms I have are pelvic pressure all the time and some discomfort during sex…and pronounced bloating / look like 4-5 months prevent sometimes and I’m slim everywhere else so it’s not great! I don’t have painful or heavy periods but appreciate this may get worse.

i don’t want any hormonal contraceptives which can ease symptoms because lots of breast cancer in my family.

I initially thought I’ll just leave it then but wondering if I need to ask for hysterectomy to reduce chance of future cancers / can’t seem to get a clear view on how big the risk. Also being totally vain I don’t want a permanent pregnancy belly but I know hysterectomy obviously isn’t a minor procedure.

any experiences or information from others who have this would be appreciated. I’m 35 with two children, pretty sure I don’t want any more.

I was finally diagnosed with adeno this year, after a decade of symptoms getting worse. Mine started with the heavy bleeding, then the pain came around my periods, then the pressure started, then the near constant pain.

Turns out my uterus was 42cm long, and 15cm wide and was full of diffuse adeno, so I had it removed a couple of weeks ago (hence the username)

Honestly for me it's been brilliant as I'm already in significantly less pain (even having had major surgery) but I had to fight really hard to get my hysterectomy so you may struggle to get them to do it if you aren't having bad symptoms? Although hysterectomy is the only real treatment for the pressure so that could be an angle

I would just have a hysterectomy. It’s six weeks recovery compared to constant pain and bleeding from your uterus. It’s not a condition that you can recover from so might as well take the surgical option.

sorry if I sound blasé but it took 10 years to get a diagnosis and my hysterectomy was the best thing ever.

@Utereusbegone i am in the same boat with a 16 week size uterus. My consultant is worried that a hysterectomy is too high risk given the size and possible vaginalrectal endo. Did you have an abdominal or laproscopic hysterectomy? I’m now on zoladex to try and shrink my uterus but have been warned it will be a slow process